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A Testament to the Human Spirit

Tyler MillardIn 2012, when Tyler Millard wrote the song “Alive”—now available on iTunes, with proceeds going to the Foundation Fighting Blindness—he was having a rough time. Since being diagnosed with retinitis pigmentosa (RP) seven years earlier, he’d lost enough eyesight to have to give up his plans to teach math. He’d also taken up the guitar and was singing and songwriting, although the gigs were few and far between.

“I was starting to feel—and I don’t know if this was just in my head—but I felt like people were thinking of me in a sort of a pitying way. And I didn’t pity myself,” Millard recalls.

That would explain the song’s lyrics, including these:

When the colors fade and the world goes gray
You don’t know where or when
But at the end of your rope is an ember of hope
Glowing there within

Today, Millard’s the leader of a band, with one self-made album under his belt and a professionally produced song that’s the result of his ties to FFB. One of the song’s producers, Todd Morris, “is a family friend,” he explains. “I went to college with his niece. But he also knows Marilyn Green”—a Foundation board member. “She asked me to attend a Dining in the Dark last year, to play some music and speak, if I wanted to. I did both.”

The 31-year-old North Carolina resident also obliged Morris when he asked for a tune that could possibly serve as a theme song for FFB. “It didn’t take me long to think of ‘Alive,’” Millard says. “Because it was so personal, I’d never played it for an audience before.” But he reworked the song and gave it to Morris, who, along with co-producer Harry Smith, lined up a recording session with studio musicians at the renowned Blackbird Studio in Nashville.

Morris had one more surprise. He showed up at the session with blindfolds and suggested everyone play the song wearing them. It made sense; like Millard, he’d attended an FFB Dining in the Dark, where attendees eat their entrées blindfolded, to get a glimpse of the everyday challenges people with vision loss face.

“We rehearsed the song a few times, so the musicians could get familiar with it, and then they tried the blindfolds,” Millard says. “It was like a challenge, and they did it in one take. The keyboard, guitar and drums you hear on the recording—all done blindfolded.”

The experience was also caught on video, and can be seen on YouTube. And, in the spirit of Morris’ request, Millard is donating 25 cents for every download of “Alive” from iTunes to FFB.

“I’m a little ashamed it’s taken me this long to get involved with the Foundation,” he says. “But I’ve learned a lot from Marilyn”—who also has RP—“about the great research it funds. It seems like a very exciting time.”

Millard’s right. A gene therapy for certain forms of RP was tested in a successful clinical trial and may be approved by the FDA within the next 12 to 18 months. The Argus II “bionic retina” was also funded, in part, by FFB, and roughly 20 retinal-disease treatments are in clinical trials.

Millard says that, when he was diagnosed, at age 21, it didn’t come as a complete surprise. Since his teen years, he’d experienced night-blindness and, while playing high-school soccer, couldn’t figure out why he had trouble seeing the ball. “So when the doctor told me,” he recalls, “it was a relief to know there’s a name for it, and I didn’t have to fear the unknown.”

His vision loss, he adds, “has been pretty steady. I sometimes use a cane and have less than 10 percent left.” It does not, however, prevent him from helming The Tyler Millard Band, which plays in and around his hometown of Greensboro, N.C. And he has the technological tools he needs for his biggest passion—songwriting. “It’s like they say—when you do what you love, you never work a day in your life,” he says.

With “Alive,” he can also inspire those with retinal diseases. “I really want them to know there are others who feel the same way,” Millard says. “I once thought it would be devastating to lose anything so integral to life. But now I know I’ll make it through. Family and friends are there for you, and you can still do whatever you want. The human spirit goes on.”


10 Responses to 'A Testament to the Human Spirit'

  1. Melanie Jones says:

    Do what you Love and Love what you do! So proud of you Tyler! Todd and Harry….. This song. Is just beautiful and inspirational for all!

  2. Liz White says:

    Our friend, Tyler had a vision, and it’s coming true. What an amazing young man, with an amazing story….
    His future will soar far beyond what Tyler has dreamed. And the fact Tyler is sharing and helping Foundstion Fighting Blindness is an example of the quality of man that he’s become, despite the bumps in the road…

    So very proud of you Tyler.
    Liz

  3. Luz Alvarez says:

    Beautiful story.I want to share another history of overcoming and courage specially when you live in a country without any support. I have a sister who was diagnosed with the same disease (Retinitis Pigmentosa) at the same age in Colombia (South America). she got a bachelor degree in a prestigious university in Colombia and then she got a Master degree. Been a teacher in a recognized Colombian university, she got scholarship from United State agency. She went to University of Illinois at Chicago getting a PhD in public heath. Actually she works as a professor in a Colombian university and has several books and researches in public health. Almost blind, she has hope in the new research(in clinical trail) and she continuies having dreams and never give up.

    • Paula Richards says:

      Amazing stories. Surely inspired. My daughter was diagnosed when she was a junior in high school.Devastating news but she dealt with it remarkably well. She graduated from college and now works in corporate America. She continues to amaze me with her strength. This comes all from her strong faith.I continue to pray for a break through in a cure for Rp. So proud of all the overcomers.

  4. Tanya Izbash says:

    Great story. Thank you very much for sharing. Will read it to my 14years old son who has Starburst, and loosing his vision rapidly; experiencing huge emotional stress; moving from being very active and having a lot of friends to being an angry and isolated, refusing even to talk about it.Sure it will encourage him to move on.
    Thank you very much

  5. kristofferson gregorio says:

    hi ,, im the father of 12 years boy who has already taken by retinitis pigmentosa…. and his vision now fading according to him…me and my wife wondering if we ever get chance to be a candidate to any test of cure… very much to hear from you soon…

    truly yours
    kristofferson and liezl gregorio
    philippines

    • EyeOnTheCure says:

      You should consider genetic testing for your son to try and identify the mutant gene responsible for causing his RP. If the gene is identified, medical databases such as PubMed (http://www.ncbi.nlm.nih.gov/pubmed/) can be searched to identify any research that is being conducted. With a molecular diagnosis, he may also qualify for one or more of the gene therapy trials that are taking place. For information on genetic testing, please see the following web link to download a PDF document:
      http://www.blindness.org/sites/default/files/pages/pdfs/Genetic-Testing-Booklet-V5.2-20151023.pdf
      Whether his disease gene is identified or not, he should still consider participating in FFB’s “My Retina Tracker”, a free registry that monitors clinical trials that are recruiting for various retinal diseases. For more information on “My Retina Tracker” please see the following web link:
      https://www.myretinatracker.org/
      It may also be helpful to periodically check the website: http://WWW.CLINICALTRIALS.GOV which is maintained by the National Institutes of Health and contains a searchable list of clinical trials for most known diseases. Each clinical trial listing will provide you with information on what the study is about, the requirements for participating and contact information.

  6. Karen says:

    My grandson who is graduating from college this month was diagnosed with RP 2 wks ago. It is so unreal to absorb for me yet he seems to be taking it like a trooper. He is also very busy with tests and ending his last semester of school. We don’t know what the future holds or how rapidly he could lose his sight but if there is anything that can slow his vision loss we hope to find it. I very much admire Tyler and his engaging spirit to help others with this awful disease.

    • Bal says:

      Karen We have similar story. We came to know about it a month ago that my son has RP, he is also graduating in a year from University. I am in same boat. I am not able to get up. We all have hope that all these God Like researchers will give us our happiness back.

  7. Anita Mata says:

    Amazing story! My son Christian is 15 years old and was just diagnosed with retina pigmentosa at 14. It had been a rough one year just trying to understand what the disease is and what can possibly happen. We first knew something was wrong when he was 4. Taking him and our 2 year daughter trick or treating in the early evening. He stumbled and walked really slow. He had been wearing glasses since he was 3 so we just thought he hadn’t adjusted to them. We realized that it was only at night that he had the issue. At the age of 5 he started playing basketball on our local aau team. Through the years becoming more competitive. He was always the bigger kid, but with goggles. When he was finally tested and was asked if his vision ever had an issue with him playing the sport he loved so much. His answer was no. In 10 years we haven’t seen a change for worse or better. But in last 10 years research has made so much progress. We have such a supporting family, friends and his coach and teammates that continue to give him the love and push him to continue doing what he loves most, playing basketball. Thanks for your story!

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